Welcome Jerry, and sorry you are having these problems.

I have not been diagnosed with anything and don't actually have trigeminal neuralgia, but I have long had symptoms that I'm sure are related to the trigeminal nerve. (When I first saw a diagram of where the nerve runs into the face and teeth, it looked COMPLETELY familiar!! I KNEW those lines very well!!)

First thing I had was some lightning-sharp pains below both ears that lasted for days or a couple weeks in 1999 (infrequent but they really got my attention!).

Three or four months later I began having a ton of weird symptoms, including painless but distinctly electrical shocks around my eye that soon were extending into the side of my nose and upper lip. This still happens (on both sides). Plus lots of other facial stabs, paresthesias, and electrical sensations.

But I also get the random stabbing pains elsewhere in my body, sometimes of the same "electrical" or lightning-"toothache" quality.

One neuro all but told me I had MS at my first visit (though I also had other symptoms--widespread paresthesias, Lhermitte's, dizziness and minor coordination problems, sudden hearing loss, etc.). Later they said I don't have MS, though they can never rule it out absolutely. I still have no diagnosis whatsoever. It's possible I have some version of fibromyalgia but who knows.

I don't have the face and body shocks as frequently as I used to, but they're still there. In fact the painless face shocks nearly went away for a few months recently (after being almost daily for 8 years) and now, just within the last few days, they're back again!! like everything else comes back.

Nancy's Law: Everything goes away... and everything comes back!

Very best of luck in finding a cause for all your symptoms and problems.

Nancy T.